Context

Exploring Emerging Online Health Communities

Whether we talk about them individually or as a whole, digital online health communities need to be set within multiple contexts before we are able to make sense of the world they inhabit. In this section the main relevant contextual fields are outlined, with findings from research interviews providing detail for each context.

It is worth providing something of a framework to think about context and, indeed, the complex nature of online health communities, on their own, in relation to each other and in relation to the below outlined contextual fields.

Giles Deluze (and then later Felix Guattari and Manuel DeLanda) provides a useful way of thinking about complex relational social formations in Assemblage theory[1]. Assemblage theory states that social formations are made up of complex elements, each of which play a role in other formations. Assemblage theory allows perceptions that view social elements as discreet and stand-alone to fall away. No longer are social structures or phenomena able to exist in their own right. Instead this way of viewing them transforms our understanding of social formations as extending into each other, interpenetrating so profoundly that views of cause and effect and linear causality are removed. We move from a reductionist world where we can see the impact of our actions to a world where everything is defined by its relation to multiple other elements.

Using Assemblage theory we can see online communities comprising multiple component parts, interwoven within various contextual fields, made real by the individual constituency members who use them and related to other health (and non health) online (and offline) communities. And as we begin to understand the various contexts these communities sit in we can see their essentially relational, contingent and emergent nature.

NHS as Context

The National Health Service (NHS) is critical context for online health communities as its universal service provision touches every aspect of healthcare provision in the UK.

Broadly, with a few notable exceptions, the NHS can be viewed as profoundly lacking the levels of sophistication required to make sense of, and then act in, the digital realm or in ways that risk any profound changes to the existing status quo.

More often than not its systems treat people as populations and not individuals, and its care pathways offer no opportunity for self care or care via peers and are locked into specialist referral systems. Interviewees talked of change only being possible in a crisis, of a culture of being in the front line being more important than prevention and of the digital health realm being seen as boring when compared to urgent care. NHS digital initiatives were reported as being too short term and not adequately resourced and of running up against a culture where there is no thinking space and no courage to effect change. One interviewee commented that there are “one million reasons a day not to be thoughtful or engage with digital” (referring to the number of people who use the NHS each day).

The NHS is overloaded and culturally wired to be in ‘fight-flight’ mode. There is little space for innovation, digital or otherwise, to develop and where it does the tightly coupled nature of systems quickly compromise or devour any potential for change, so that systems stay in stasis. Where change does take root the speed of approvals and adoption, compared to tech adoption, means developments are often outdated before they are even up and running.

Technology as Context

The fast moving world of technology overall, the subset of tech that is working in health, and the way users engage with and through technology are all important contextual aspects for the world of online health communities.

As we will read elsewhere in this report technological development has driven down the entry costs of digital participation and production effectively to zero, fundamentally transforming both market and social dynamics of our economy and society. Already well developed in other sectors (such as media, music, publishing and retail) the implications of this revolution are just beginning to be felt in the health sector.

How users engage with health online is also important, and of course heterogeneous, context. The simple fact that this engagement is so heterogeneous means we must view these communities as Assemblages and accept the diversity of position, view, usage etc. within them rather than limiting ourselves to just finding themes or trends in usage.

However, important trends that emerged through the research were: a deep asymmetry of usage, beyond normal internet asymmetry, with between 3 and 5% of users active in online health communities (with the other 95 – 97% consuming rather than producing and consuming content); and an often reported desire for anonymity from users.

Another important piece of context is design and use of technology, both hardware and software. The concept of affordances, the relation between the object and the organism, offers a way of thinking about how the design of technology shapes our online experiences[2]. The position, size, availability or absence of hardware or software functions in design fundamentally configures our experience of online health communities and is an oft forgotten, but critical, component that will define whether an initiative is successful or not.

Disease as Context

Disease and disability are both important as context for online health communities. Without them, and the accompanying import and urgency, communities have no raison d’etre. Overwhelming disease or disability may limit individuals’ potential and desire to engage.

As a result of research the following observations were made:

That people with long term, life threatening or chronically disabling diseases with little or no cognitive decline are most likely to engage with online communities.

In contrast individuals who are experiencing short term conditions, palliative care or non life threatening or chronically disabling conditions are least likely to engage with online communities.

And in the case of individuals who experience cognitive decline as part of their condition then it is the family and carers of these individually who are likely to engage with online communities.

A graphic representation of this is below, showing severity of disability imposed by condition on the vertical axis and duration of disease on the horizontal axis.

Patient as Context

Patients, individually and as Assemblages, are, of course, critical context for online health communities. Without the individual / patient, their relationships to their disease or diseases, to their health care arrangements, to their technology as well as to other patients and actors in their realm, online health communities are nothing.

Interviewees reported that while diseases often galvanise individuals to engage with online communities, long term conditions can become an accepted way of life that people settle in to and so become a brake on engagement with related online communities, as their experience becomes normalised and dampens their drive to address their condition.

Clinician as Context

Clinicians are implicated in context and Assemblage throughout the field of online communities. They may be engaged and “simply get it”, pioneering new technological and social approaches to care, as some interviewees clearly reported. Or they may be bounded by medical linearity or unable to meaningfully engage with the expert patient phenomena that is a result of the internet. Either way, whether they are constrained by having to maintain their expert status, or whether they are see the big picture and are agents of change, they are not to be forgotten as important elements in the Assemblages of online health communities.